I haven’t posted for over 12 months but thought that I would share that today I dropped to 0
It’s been a 2 year journey and I remember when I first posted on this forum it was to say that I had a 12 month schedule.
PMRpro quite rightly replied PMR will dictate the schedule and here I am a year late but must admit that after the initial shock I settled into a slow taper as follows:
Start dose 30 mg down to 20 in 3 months
20 down to 7 in 9 months
7 down to 0 in 12 months.
When I got to 7 I was content to go slower and when on 5 even slower again. I have been on 1/2 mg since Christmas and seeing as my blood markers came back normal I decided to make the move to 0 and today is day one at 0 but the next 4 will be 1/2 and then 2 days at 0 etc. Still being very conservative
Once I have had a couple of months at 0 I will do a full post on my PMR journey and the lumps and bumps along the way and what worked for me.
So to all those that supported me and in particular you all know who (PMRpro) thanks for all your advice even if I didn’t listen at times👍
JohhnyQ
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JohnnyQ50
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I did intend posting a full account of my observations along the way and decisions I took including why I dropped my Rheumatologist after just one visit after reading posts on this forum and decided to just go with my GP who has been a rock.
I haven’t had any major set backs or flared but found the early stages very confusing until I learnt to read what my body was telling me to distinguish what were PMR symptoms, withdrawal symptoms or a potential flare.
I have only recently retired and have continued playing golf and exercising the whole time.
I promise that I will take the time to do a full post in the hope it will provide inspiration to others to stay the course.
I'm really pleased for you Johnny and yes, let us know in detail how you managed your journey down to zero, as we learn so much from our fellow PMR sufferers.
Well done, and good luck with the final leg....I took 1/2mg to zero very slowly......and it worked for me. Hope it does for you....but do keep a few in the bathroom cupboard just in case of emergencies!
Good....and remember not all new aches and pains are PMR related - most are ‘normal’ ones of life which previously may have been masked by the Pred...plus of course, you are a ‘little’ older than pre Pred! 😊
Oh well done. Getting there without flares sounds wonderful and it is so good to hear these things are possible, even if the journey is not quite at an end.
Four months ago I posted on my very first 0 Pred day and promised to do an update on my journey if I managed a few months Pred free and am glad to say I haven’t taken any Pred for 3 months without any hint of PMR symptoms or flares.
As I mentioned in my last post it was just over a two year journey for me. I suspect I had PMR undiagnosed for several years, things like discomfort when sitting for long periods and occasional upper arm pains which I put down to being too much exercise.
I was finally diagnosed when I woke up one morning and couldn’t lift my arms and had pain through my shoulders and hips. I was diagnosed and put on an initial dose of 30mg of Pred which had an immediate effect and I felt much relief.
Initially I was in denial and changed my diet, made fresh fruit juice every day and did a lot of research. I have always had a lot of immune system disorders such as hay fever and eczema so guess I was always prone to getting PMR.
My special dietary care lasted a few months and then I reverted back to my normal diet and habits including as I mentioned in an earlier post my liking for a pint or two of Guinness.
Throughout my ordeal I never gave up on my exercise and continued playing golf several times a week and having a few drinks at the Country Club after.
Upon diagnosis I was referred to a Rheumatologist but lost faith in her when she said my wrist pains were not PMR which only effected the hips and shoulders, this was contrary to what I was gleaning from this site so I did a deal with my Doctor to self manage my medication with him providing testing and advice on my condition.
It’s good when a Doctor understands that having a hard and fast medication program doesn’t work for this disease as there are so many things at play, the PMR, Pred and withdrawal symptoms can only be understood by the patient and over time you get to know the subtle differences and wether you need to go up or down on the dosage. Having a good taper plan and monitoring your bloods is a must.
Reading posts on this forum certainly is helpful and you can pick up a lot of good advice but you need to be mindful that several people posting on here have underlying problems. I was lucky as I didn’t get weight gain or chronic fatigue or any of the other more nasty symptoms and managed to keep working until I retired last year. I did go through a stage when I reached lower doses >5mg that I needed a nap in the afternoon but that might have also been because I had recently retired and was afforded the luxury of a nap.
My recommendation is to set a good taper plan but knowing this is not hard and fast, listen to what your body is telling you and be prepared to adjust your plan as you go.
Best wishes to everyone on this forum and I will be checking in from time to time.
If you want many to see this I suggest you post it as a new thread with a link to this thread. Only anyone who followed this thread originally will be notified. It really is so helpful when there are success stories like yours to refer to.
You can C&P to save writing it all again.To link a thread you C&P the https line at the top of the page - click and drag the whole line and copy just like anything else ... Of it you can't manage that, just write the title of this post so people can find it on your profile page.
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Tapering the Preds!!!!
Pred Free for 3 weeks
Last day of 5 day Pred trial.
Increased Pred made a difference but not there yet
